Experiment involving 1,300 premature infants ‘failed to adequately inform parents’ of treatment risks

“They went out of their way to tell you that your kid might benefit. But they didn’t give the flip side, which is that there is a chance your kid might end up worse off. You can’t have it both ways.”

Read more at the Washington Post.

3 thoughts on “Experiment involving 1,300 premature infants ‘failed to adequately inform parents’ of treatment risks”

  1. Human experimenters ought to be held to the highest standards. There is no excuse for not disclosing all the risks — such disclosure protects the researchers and their institutions as well. We have rules for human experimentation that were set down after WWII. They are simple and ought to be enforced. The degradation of science has been accelerated in no small part by the attitude of no harm, no foul all the way to the slippery slope. This may seem fundamentalist in nature, but it seems that things go best when clear rules are clearly enforced.

  2. After reading the complete article, MT, I am inclined to agree with you, wholeheartedly. It doesn’t sound like anyone was trying to be dishonest. Maybe it’s just a case of bandwagon mentality with all the other poorly done science flying around, people are just assuming the worst….

  3. I dunno if I’ll pay retail for this one.
    Any “informed consent” related to clinical experimentation is going to please some reviewers and seem shaded to other reviewers. The multiple problems that are common for pre-term babies and the multiple risks of pre-term babies make it hard to assess whether the treatment protocol made any difference in outcomes, but the parents whose children had lower outcomes and were also in the lower-oxygen therapy group may be judging the form and their counselling process from an emotionally-impaired perspective. I think I would be.
    This is not “Mengelian” experimentation. There is no sign that anyone intended to mislead the parents nor that the infants were knowingly put at risk. One hopes that, in the clinical setting, any child who was on low-oxygen protocol and who seemed to be doing poorly would have the protocol adjusted.
    Incidentally, this is the kind of thing where the much-maligned “data dredge” might be informative, and maybe one was used to design this experiment.

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